At first, Samantha Pack-Witmer thought her son’s headache was no big deal. Camden was just a few days into second grade, and prone to various ailments — colds, earaches, that sort of thing. Pack-Witmer has two other kids (an older son and younger daughter), and she knew the drill. 

“We thought, ‘This is normal. They bring home all kinds of stuff,’” says Pack-Witmer.

It wasn’t normal, though. Over the next three weeks, he became lethargic. The once energetic and happy-go-lucky kid, who loved to be outdoors, especially if he was hunting and fishing with his dad, was now inside, sleeping most of the day and waking up miserable. 

“Prior to this, Cam was full of life and very active,” says Pack-Witmer. “He was the pitcher on his baseball team. He was so excited, and he loved doing it. This just took the spark out of him. He was upset. He was frustrated. He was like, ‘Why me?’ He didn’t understand. We didn’t understand. And all we could say is, ‘We’re here for you.’” 

His parents, long past their original skepticism, took him to doctors near their home in Carroll County, Maryland, and even to an emergency room, where he was diagnosed with inflammatory encephalopathy and given treatments that seemed to help. 

A few days after he was discharged, however, Cam took a dramatic turn for the worse. He began slurring his words, his left foot turned inward, he was wetting himself and — most alarming — one day he woke up and announced he could not see. 

“My husband and I looked at each other, and we were like, ‘This isn't good.’ We were at the point where we were afraid we were going to lose our child.” 

Pack-Witmer had an idea. She asked her aunt to watch her other children and the family dogs. She put her son in her car, and she and her husband, Ryan, drove Cam 45 minutes from their home to Johns Hopkins. 

“We didn’t have an appointment,” she says. “We just showed up, and I explained what we had been going through for the past few months.” 

Finally, Answers

Within 24 hours, the family had answers. 

A simple blood test, combined with information about his symptoms, revealed that Cam has MOGAD, or myelin oligodendrocyte glycoprotein antibody-associated disease, a rare condition in which the central nervous system attacks the brain, spinal cord and optic nerves. Specifically, he had been experiencing ADEM (acute disseminated encephalomyelitis), an autoimmune attack of the brain and spinal cord, combined with myelitis and bilateral optic neuritis.

The diagnosis was good news, because he was in the right place, one of the few pediatric hospitals in the country with expertise in diagnosing and treating the condition, which generally responds well to early intervention.  

“Finally, we can have peace of mind,” Pack-Witmer recalls feeling. “We have the support that we need. We’re getting answers. We took a deep breath because we knew he was safe. We knew he was getting the care that he needed.” 

Leading the Way

Dr. Brenda Banwell

Johns Hopkins Children’s Center is co-led by pediatric neurologist Brenda Banwell, one of the world’s leading experts on MOGAD.

She has been studying neuroimmune disorders since 1999, starting with her first faculty job at the University of Toronto, The Hospital for Sick Children. At the time, it was clear that MOGAD was different from multiple sclerosis, though it wouldn’t even have a name until 2018. 

Now, she’s chair of an international group of about 150 MOGAD researchers who meet every month to discuss research, clinical observations and best practices. In that role and others, she’s leading efforts to increase awareness, testing and information about a disease that is still shrouded in mystery.

After Banwell joined Johns Hopkins in September 2024 as chair of the Department of Pediatrics and pediatrician-in-chief for Johns Hopkins Children’s Center, one of the first things she did was join Haiwen Chen in the Pediatric Multiple Sclerosis, MOGAD and Neuroimmune Disorders Program that Chen had established.

The program is laser focused on understanding and treating these conditions, which all involve a breakdown of the coating that normally shields nerves from inflammation. 

Banwell and Chen, an assistant professor who became Cam’s doctor, work closely with adult neurologists at The Johns Hopkins Hospital, as well as with pediatric physical therapists, speech therapists, psychologists and others. Chen was a fellow at Johns Hopkins when she first met Cam, who was initially treated by neurologist Elias Sotirchos, whose patients are mostly adults. 

MOGAD is caused by an antibody called myelin oligodendrocyte glycoprotein immunoglobulin G (MOG-IgG), which attacks the healthy MOG proteins that protect nerve cells. The antibody can be detected by an assay that was developed in 2014. 

However, inflammation and attack on myelinated pathways in the optic nerves, brain and spinal cord also occur in multiple sclerosis and other neuroimmune disorders treated in the Children’s Center program. 

Differentiating among the conditions is crucial because they have different disease trajectories and treatments. Diagnostic criteria exist for each disorder, but telling them apart requires expertise.  

Banwell is lead author of the March 2023 Lancet Neurology article that created definitive guidelines for a diagnosis of MOGAD, which include the antibody test, MRI confirmation and symptoms that characterize the disease. Sudden loss of vision caused by optic neuritis is the most common onset feature, particularly among adults, while ADEM attacks like the one Cam experienced are more common in children under the age of 11. 

Other symptoms include headaches, weakness and incontinence (due to spinal cord involvement). In some people, MOGAD presents as a single attack, while others experience recurrences. In extreme cases, children can lapse into comas and even die due to acute brain swelling. Treatments to save children with life-threatening MOGAD have been described by Banwell and others. 

When Cam was admitted to Johns Hopkins Children’s Center three years ago, he received infusions of high-dose corticosteroids for five days in order to reduce the inflammation that was causing his headaches, vision loss, incontinence and weakness. 

Other treatments include plasma exchange, a process that removes MOG antibodies from the bloodstream, and medications like tocilizumab. To prevent attacks in children who experience relapsing MOGAD, monthly intravenous immunoglobulin therapies (IVIG), which provide immune-supporting antibodies from healthy donors, are often prescribed. 

Cam’s symptoms abated, and after a week he went home. He could see again, he was walking much better with help from a physical therapist, and his energy was returning. 

Two months later, though, his headaches worsened. They got so bad that he’d wake up, crying, from the pain. An MRI revealed new lesions in his brain, indicating that further treatment was required.

“We ended up back in the hospital for a week with the same regimen of steroids, and this time they said we are going to be more aggressive to prevent this,” says Pack-Witmer. 

To reduce the risk of another flare, the now 12-year-old started getting IVIG infusions at home every two weeks. It’s now every month. The process takes several hours, so he distracts himself with visits from friends and television shows like SpongeBob SquarePants, his favorite.

MOGAD Knowns and Unknowns

Much is still unknown about MOGAD. 

“Is there an infection or an exposure that leads to this condition? Are there any genetic risks? So far, we have not found any specific infection nor any genetic cause, although most patients report a minor illness in the weeks prior to their first MOGAD attack,” Banwell says. 

While MS is more common in adults than in children, it’s not yet known if MOGAD favors any particular age or demographic. Many patients are diagnosed in their 20s and 30s, and it appears that about 30% of patients with MOGAD are children, though that proportion could change as more providers learn to recognize and diagnose the disease, says Banwell. 

More recognition from clinicians also means more early intervention, which can make an enormous difference. 

Sixteen-year-old Rose, for example, began having headaches and blurred vision that got worse over the course of a couple of weeks. “I took her to the ER, and they sent her to a specialist to check her eyes and then she got admitted to Bayview, and from there she went to Johns Hopkins Children’s Center,” says her mother, Rosa. 

Rose was diagnosed with optic neuritis due to MOGAD, and treated with steroids and plasma exchange therapy. A recent MRI shows no additional damage. Now, says the Dundalk High School 11th-grader, “My vision is back to normal, maybe even a tiny bit better,” and she’s taking a full roster of challenging classes. 

“It was really scary because no one was able to tell me what was going on,” says Rosa. “But when we got to the Children’s Center, they did their job and they told me.” 

Spreading the Word

Banwell is passionate about sharing her MOGAD knowledge. She regularly leads seminars and consults with neurologists who may be treating a patient with MOGAD for the first time. She’s one of 15 U.S. medical advisers (along with Sotirchos) for The MOG Project, started in 2018 by Julia Lefelar, a Gaithersburg, Maryland, resident and one of Sotirchos’ patients with MOGAD. 

“She is the master of saving kids who are in these situations,” Lefelar says of Banwell. “One of the things that really sets apart kids who have MOGAD is that once they do get help, they could have a recurrence, but we know that healing is possible, especially when people get in early.”

Lefelar, 62, wasn’t as lucky, although she’s doing well now. She began having MOGAD symptoms in 1999, well before any doctor could recognize that her fatigue and racing heart were caused by MOGAD.

At the time, she was raising two young children, working full time at the Johns Hopkins University Applied Physics Laboratory, and swimming regularly for fitness. “I felt like I couldn’t breathe unless I made myself breathe.” Her vision darkened, and four separate times it disappeared altogether. 

“I was going to doctor after doctor, and they were shaking their heads,” she says. Some gave her antibiotics. One referred her to a psychiatrist, who hinted the problem was in her mind. Finally, in 2014, she got to Johns Hopkins, where Michael Levy, then director of the Neuromyelitis Optica Clinic, administered a then-new antibody test and began targeted treatment. 

Today, her vision is pixilated — “like a 1970s television,” she says — and she continues once-a-week immunoglobulin infusions. 

Back when she began treatment, Lefelar couldn’t find information online, so she teamed with family members to create The MOG Project in 2018. The nonprofit advocates for research dollars, connects patients and families with support groups, and hosts events like an annual patient summit, slated for Baltimore in 2026. 

Peace of Mind

Camden and his dog, Clover

In August, Cam started middle school with a full load of honors classes. He still hunts and fishes with his dad, but he’s not playing baseball anymore. “He tried, but he couldn't pitch like he used to, couldn’t hit like he used to,” says his mom. 

He loves his dogs and his hamster, his funny shoes that are shaped like fish, and his favorite drink, AriZona green tea. He can be shy, but he also loves to joke. 

So far, there have been no relapses and no signs of new brain lesions. But he feels like he’s ready if another attack occurs.  

“I already know what would happen, so it doesn’t really bother me,” he says. “I know there’s a solution, so that gives me peace of mind.”